Two years and counting

[Adro]

I have had SS for the past two years. I have had swellings and rashes in varying degrees over this time, which have been managed with a course of Prednisone up to 30mg/day on a reducing dose only for the rashes and swellings to return. I am currently on 16mgs of Prednisone and 125mg Dapsone, and have swellings on the inside of each wrist which are quite sore, and a few rashes on my chest, neck and back. I’m due to see my Dermatologist next week for a review, and hopefully a check on the medication.

Happy New Year to all.

[Shell567 Administrator Sweet's Syndrome UK]

Hi Adro,

I hope your doctors find a treatment regime that works for you.

Has your SS developed secondary to another condition? This can make it more difficult to manage.

[Adro in reply to Shell567]

Hi Shell567 I have been fit and healthy all my life, I’m 66, and looked forward to a fit and active retirement this SS had been an unwelcome issue.

[Hidden]

Good afternoon Afro, I'm so sorry to hear you have been diagnosed with SS.

Very much unwelcome, I've just turned 45 and like you have before SS never been sick.

If you read my previous posts you can see how SS effects me, rather than me babblefor age repetitively.

I have tried numerous medications, and having been on steroids for over 8 years now as a consequence I was recently diagnosed with Type 2 diabetes.

My SS is not secondary to any other disease and has never left me a day alone since the start.

I do have to touch wood before I say that I've not had a flare up big enough to put me back in hospital for a while now but i get smaller regular outbreaks especially on my elbows, knees, knuckles and hands, when I say regular I always have some healing whilst new ones appear all the time as well as painful mouth ulcers.

Apart from the sores, I suffer everyday with my joints and body being sore, I have swelling that make it look like my bones are a set of hills and simply to touch a joint is excruitating, my finger swell to double the size so I can' bend them so can't grip or hold things, my knees ankles and toes get so sore tears come to my eyes when having to stand or move about.

Everyday is different and I'm normally at my best early morning and get worse as the day get on.

I'm still on 30 mg prednisone and can go upto 60 mg depending on severiry as well as morphine and oramorph and other nasties.

I do hope your Doctor is able to find a good combination of drugs that work especially with the joint and limb pains as these are my debilitating factors more than the sores.

Shout if I can help or babble some more.

Warmest regards

Jacqui